[Re-sent] May 1, 2024

Hey - Happy May! What a fun month. The weather is good ☀️, Mother's Day🌹, World MS Day 💪🏻 (same day as my birthday 🥳- is that a coincidence or destiny??)My backyard is so peaceful. The azaleas have faded and the wisteria is done but the honeysuckle will be out soon. I have a duck couple that visit me and my dog Snickers every morning and I'm quite sure they will be bringing their little ones for introducksions 🦆 soon. I see Blue Heron and Egrets fly through the channel most mornings heading into the lake for a day of fishing. I am so grateful for all of the beauty I get to witness every day. I hope you have nature nearby you. It is meditative and it can help with mental health challenges so much.OK - let's see what's going on in the world of MS, shall we??1.  I fell. Well - it was a year and a half ago - but still - I fell. And it REALLY hurt (still does). I thought it was just a bruise and would go away on its own. But it didn't. So I went to see a doctor and after some X-rays, I learned that I had fractured my pelvis. WHAT!?!? 😳 That seemed extreme. Actually, not so much. I have osteoporosis. Apparently - a lot of us do. And not just because of the use of steroids to help with flares, but because of MS itself. Seems there is an increased risk of osteoporosis with MS. It's the gift that keeps on giving. Did you know that???  I didn't. MS wins this round. Bastard. Osteoporosis in a Woman With Multiple Sclerosis: A Case Report2.  For those of us with kids when we were diagnosed - I bet I know your first thought after hearing "you have Multiple Sclerosis": will my kids get it? Can I pass it on to my kids??  UGH - I remember that particular fear. My neurologist at the time did a lot to calm that particular fear - but over the years, every time one of my girls said their hand was numb or their eye was twitching I thought "oh no - is this MS?" Clearly, I'm not alone. This writer shared that fear as well: My biggest worry post-diagnosis was whether MS could be inherited3.  So - sorry to add to your worries but - ummm - well, "the risk for seizures was nearly twice as high in patients with MS vs the general population and was potentially related to disease burden and S1PR modulators." What in the actual f-bomb? The only thing that makes sense to me is that we are made of something different - call it badassedry. Whatever it is - we are clearly overachievers that can have multiple comorbidities and still function (well, relatively speaking!). Here's another gift: Seizure Risk in Patients With MS Nearly Double4.  Have you heard the term "smoldering MS"? "This refers to areas of persistent and chronic inflammation that remain even when active inflammatory attacks aren’t occurring." It's not easily caught on MRI. So - it goes unchecked. 🎺 BUT - have no fear - PET scan's here! Specialized PET scan shows chronic inflammation tied to MS progression5.  Have you chosen not to disclose your MS diagnosis, either at work or just in general? I used to counsel people to be open and honest about it to everyone because I thought having to keep something like that to yourself could become such a burden I didn't think it was a healthy choice. Then I spoke with MANY people who shared their diagnosis both at work and in their personal lives and were met with misunderstanding, discrimination, job loss and personal alienation. I no longer suggest disclosing. Only YOU can know your situation and make the best assessment of the "what ifs" in your life. I hate this reality for anyone, but it is what it is. Even celebrities have to take it all into consideration: Jamie-Lynn Sigler reveals ‘The Sopranos’ set physician advised not to disclose MS Diagnosis6.  I recently had an epiphany: I don't know an MS advocate who is working full-time. Accept me. And that's because I started an advocacy business 12 years ago and I work at home and can lay down when I need to or go to the doctor without having to beg for time off, etc. Being self-employed has allowed me to keep working. But - self-employment is a grind and not possible for everyone. Then what?? Employment, income drop steadily over 2 decades after onset of MSThat's all folks. Let me know if you have any questions or if I can help you in any way. Otherwise, just keep saying FUMS!! 🧡Cheers -- KathyKathy Reagan YoungFounderFUMS

Kathy Recommends:I wish my friend Julie Stamm had written this book when my kids were little and I was diagnosed. It helps kids understand life with MS - or any other chronic illness. "Although some days are fast and some are slow, Rosie and Wyatt fill each one with love, excitement, and fun . . . not to mention ice cream!" *She had me at ice cream (Blue Bell Rocky Road, please). Get it to share with your kids - or give it as a gift for kids with a parent with a chronic illness.  Some Days: A Tale of Love, Ice Cream, and My Mom’s Chronic Illness

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